An Animal That Means a Lot to Me

This means we both have very rare medical conditions. Why zebra? Well medical students are taught to look for the obvious and not to get caught up in a rare diagnosis. The saying goes; “When you hear hoof beats think horses, not zebras.”

We have both been fairly lucky. It took a while to convince my daughter’s consultant that she was a zebra, but once we did she has been given a lot of help. She has Elher’s Danlos Syndrome which is a connective tissue disorder. There are seven types of EDS and Star is still being tested to find out which type she has. Mostly her condition is invisible and she looks like every other child. However, it wasn’t invisible when the connective tissue holding her neck up became too lax and her cervical spine was damaged.

This is Star wearing her cervical halo. I took this photo because some people thought we took it off for her to sleep in. Nope, a halo is fixed into the skull and cannot be removed except by a surgeon. She had to wear the halo twice, for around thirteen weeks each time. 

Star has had a fixation, which means her neck is held together with screws and titanium plates. Without it her future would have been bleak, if she actually would have had one.

So she is one special little zebra.

As I said at the beginning, I am also a zebra. I went into hospital this year on January 1st with a mystery condition which left me paralysed. I had a condition that affects only 300 people a year in the UK. I wasn’t lucky to get the condition but I was lucky to get a consultant that knew what it was straight away and giving me the best chance of recovery. 

The bad news is that so little is known about the condition I don’t really know if I will recover, but I can keep on hoping and working towards recovery. One day I could be free from pain and be able to walk normally again. One Day I will as free as a zebra! 

I hope you don’t mind me turning this around from being about an animal but I do like to take the chance whenever possible to let people know about these rare conditions that have blighted my family. 

You can find out more about Elher’s Danlos Syndrome here, or read Star’s Story here.

You can find out more about Transverse Myelitis here, or read my story here.

Thank you x